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My Crazy Promacta Journey

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7 years 8 months ago #62208 by penlyn63
My Crazy Promacta Journey was created by penlyn63
I'm so frustrated! After fighting so hard to get my insurance company to pay for the Promacta, after almost 3 months I'm not sure it's going to work for me.

My initially high counts have plummeted. We've upped the dosage back to 50 mg, which I have now been at for 4 weeks, and I'm dropping every week. I'm currently hanging at 53, and dread going back next week.

Each treatment I try (prednisone, Rituxan, Promacta,) seems to work initially, and then stops. Arrrrrgggggh!

Just needed to vent.
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7 years 8 months ago #62209 by poseymint
Replied by poseymint on topic My Crazy Promacta Journey
Pen- please don't give up on the TPOs too soon! I wish I had money for every time I thought Promacta/Nplate was losing its effectiveness- I've been on them for 6 years. These drugs can surprise you! 50mg is the recommended dose for most people and 53K is the target platelet count- so for this week anyway, you are doing great!

My ideal counts on TPOs are between 20-80K, I like hovering around 50k. But my counts fell down to 15k in November. I thought for sure Nplate had lost its effectiveness. But I stayed on the same dose and they came back, even to a surprising 95k by December.
I get weekly blood draws, recently my counts have been-- 42 15 34 29 27 42 35 95 56 40
The following user(s) said Thank You: penlyn63
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 8 months ago #62215 by Sandi
Replied by Sandi on topic My Crazy Promacta Journey
^^^^^ What she said!
The following user(s) said Thank You: penlyn63
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7 years 8 months ago #62224 by penlyn63
Replied by penlyn63 on topic My Crazy Promacta Journey
Thanks gals! Just so frustrating. I dropped down to 29 and then 20, then 9, and had to have a platelet infusion; but we had cut back the dosage, and I thought for sure if I went back up to 50 mg I'd be fine. It went immediately to 139 after the infusion and raise to 50mg, then 117, then 64, now 53. I'm always happy to be above 50, but this trend has me freaked.

I was finally high enough to get a colonoscopy and endoscopy, (which came back completely clean,) which was nice. But it's just so dang confounding. I hate this disease!
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 8 months ago #62226 by Hal9000
Replied by Hal9000 on topic My Crazy Promacta Journey

penlyn63 wrote: ... had to have a platelet infusion ... It went immediately to 139 after the infusion and raise to 50mg, then 117, then 64, now 53...

I don't respond to steroids and may be out of line here, but I have to wonder if a steroid rescue would have been just as effective as a platelet infusion in raising counts. Perhaps even a steroid rescue without raising the Promacta dose? Does that sound right Posey?
ITP Types and Treatments by HAL
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7 years 8 months ago #62227 by penlyn63
Replied by penlyn63 on topic My Crazy Promacta Journey
I don't respond to steroids any longer either; or haven't Hal. They were not going to let me leave the campus with a count of 2. I was only on 25 mg at that point and just wanted them to let me leave and go up to 50, but they shipped me to the hospital infusion room. I actually was kinda shocked it only went up to 139 afterward, altho for me that is sky high!
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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